April 26, 2022
The Honorable Charles Schumer
Majority Leader, US Senate
The Honorable Bob Casey
Chair, Senate Special Committee on Aging
The Honorable Mitch McConnell
Minority Leader, US Senate
The Honorable Tim Scott
Ranking Member, Senate Special Committee on Aging
The Honorable Nancy Pelosi
Speaker of the US House of Representatives
The Honorable Carolyn Maloney
Chair, House Committee on Oversight and Reform
The Honorable Kevin McCarthy
Minority Leader, US House of Representatives
The Honorable James Comer
Ranking Member, House Committee on Oversight and Reform
The Honorable Patty Murray
Chair, Senate HELP Committee
The Honorable Patrick Leahy
Chair, Senate Committee on Appropriations
The Honorable Richard Burr
Ranking Member, Senate HELP Committee
The Honorable Richard Shelby
Vice Chair, Senate Committee on Appropriations
The Honorable Frank Pallone
Chair, House Energy and Commerce Committee
The Honorable Rosa DeLauro
Chair, House Committee on Appropriations
The Honorable Cathy McMorris Rodgers
Ranking Member, House Energy and Commerce Committee
The Honorable Kay Granger
Ranking Member, House Committee on Appropriations
We, the undersigned disability rights, pain and drug policy organizations, urge Congress to exercise its oversight authority to ensure that the needs of people with serious pain and/or opioid use disorders who rely on prescribed opioids are not left behind as the Centers for Disease Control and Prevention (CDC) updates its Clinical Practice Guideline for Prescribing Opioids.
The CDC published its draft 2022 update on February 10 with a 60-day comment period. The draft acknowledges the harms that resulted from widespread policy misapplication of its 2016 Prescribing Guideline and takes steps to amend them. While this language is welcome, the CDC also acknowledged these harms in 2019 in a major medical journal, the New England Journal of Medicine, yet its admonitions failed to filter down to the lives of patients at greatest risk.
We continued and continue to receive an avalanche of stories from people who were stable on opioids having them suddenly cut off, or being dismissed outright by their providers and left abandoned in care entirely, unable to find a provider willing to treat them. Many are people with serious disabilities and conditions, and the consequences have been devastating, including increased pain levels, loss of function, overdose, and suicide.
Numerous studies have now affirmed what these people report: opioid cessation, rapid tapering and patient abandonment are all on the rise, subjecting people to harm. One study found the average time of opioid discontinuation was 24 hours, with about half of patients tapered requiring emergency room care or hospitalization as a result. Another found that just changing the dose of someone who has been stable on opioids increases their risk of death threefold. Another found three to fourfold increase in suicide, while a further study linked tapering with use of street drugs. Yet another showed opioid tapering or cessation increased the risk of death and destabilizes people’s health, mental health, and lives.
Studies further evidence that opioid tapering or cessation is associated with the breakdown of healthcare relationships, and those who lose care are unlikely to regain it. A recent study of primary care clinics in 9 states found half would refuse to provide care to a prospective patient who requires opioids.
Such harms have come even to people who were expressly exempted from the 2016 Guideline, including those with cancer and sickle cell disease. A 2022 study found a significant drop in opioid prescribing for people with cancer after the 2016 Guideline went into effect.
Fortunately, the CDC’s proposed draft contains many improvements that both acknowledge and aim to ameliorate these harms. The draft underscores that pain is an important public health priority and that care of people with pain must be individualized. It advises against providers dismissing or abandoning patients from care. In a welcome pivot, the updated draft removes from the mainline recommendations dose and duration limits – two of the more concrete provisions that were mostly widely misapplied – and states that the Guideline is “not intended to be applied as inflexible standards of care.”
It remains unclear, however, how these admonitions and recommendations will prevent continued misapplication and patient harm. More to the point, just telling doctors not to abandon patients, which they likely already recognize is a violation of law and ethics, will do little to change behavior without addressing the reasons abandonment is happening. Similarly, just telling policymakers not to use the Guideline inflexibly will not protect against future misapplication when policies and practices are already solidly in place.
Instead, as hindsight offers clear vision, the CDC must draft with the expectations – given history – that its guidance will be used to inform future laws and mandates. And it must take affirmative steps to work with policymakers to undo the harm that continues in real time. The 2016 Guideline was issued as voluntary guidance, but policy actors throughout the healthcare environment — including states, payers, pharmacies and pharmacy benefit plans, health systems, and law enforcement agencies — treated it as a mandate. Between voluntary guidance and mandates is a gap in authority and accountability into which the lives of far too many vulnerable people have fallen.
Because of this gap, Congressional action is necessary this time around. We are asking Congress to conduct hearings that document the harm that resulted from the strict application and misapplication of the CDC’s 2016 Guideline. Hearings should also consider pain management more broadly, including how best to ensure that tools recommended by the updated draft – which covers not just chronic but acute and subacute pain as well – are actually covered by payers so the Guideline does not simply exacerbate current disparities in pain treatment.
Long-term pain is the primary cause of disability in the US; it is our most widespread chronic health issue and our most costly by a significant margin. One in six people lives with daily pain, and nearly 20 million people experience pain that prevents life activities and work. Pain intersects with and may underlie other widespread public health conditions, including mental health and substance use. We will not adequately address the intersecting public health crises of long-COVID and drug overdoses without addressing pain.
Some eight to 13 million people in the US rely on opioids to manage pain, and many of the 2 million Americans with an opioid use disorder require access to prescribed opioids as well. Both groups continue to face unconscionable barriers to care.
At a moment when the number of both overdoses and people with long-term pain from long-COVID are increasing, Congressional focus on both remains a pressing need. We cannot continue to measure success simply in terms of gross drops in opioid prescribing, especially absent metrics to measure patient safety and well-being. Notably, as prescribing has dropped since 2012 to per capita levels last seen in the 1990s, overdose deaths have continued to escalate dramatically due to a tainted illicit supply. New solutions are needed to address both overdoses and pain.
Holding hearings concurrently with the CDC’s effort to update its Guideline will help ensure an outcome that truly mitigates harm.
Sincerely,
National Organizations
National Council on Independent Living (NCIL)
National Pain Advocacy Center (NPAC)
Access Ready Inc.
AIDS United
Alliance to Advance Comprehensive Integrative Pain Management
Association of Programs for Rural Independent Living
Autistic Self Advocacy Network
Center for Dignity in Healthcare for People with Disabilities
Center for U.S. Policy
Childhood Pancreatitis Foundation
Chronic Disease Coalition
Don’t Punish Pain
Drug Policy Alliance
Health in Justice Action Lab
HealthyWomen
hope411.org
National Advocacy Awareness Clinic
Not Dead Yet
Paralyzed Veterans of America
Patients Rising
Power Beyond Psoriasis
Progressive Independence, Inc.
Support Fibromyalgia Network
TASH
Urban Survivors Union
US Association for the Study of Pain
State & Local Organizations
California
California Foundation for Independent Living Centers
California State Independent Living Council
Community Access Center
Independent Living Center of Southern California
Rolling Start, Inc.
Service Center for Independent Life
Colorado
Atlantis Community, Inc.
Colorado Cross-Disability Coalition
Connecticut
Independence Northwest, Inc.
Hawaii
Aloha Independent Living Hawaii
Illinois
Progress Center for Independent Living
Springfield Center for Independent Living
The Statewide Independent Living Council of Illinois
Indiana
Indiana Disability Rights
Indiana Recovery Alliance
Kansas
Southeast KS Independent Living (SKIL) Resource Center
Topeka Independent Living Resource Center
Massachusetts
Boston Center for Independent Living
Disability Policy Consortium
Maryland
Accessible Resources for Independence Incorporated
The IMAGE Center for People with Disabilities
Michigan
Disability Network Southwest Michigan
Minnesota
Options Interstate Resource Center for Independent Living
Missouri
Paraquad Inc.
Montana
Montana Independent Living Project
North Dakota
Navigations Systems of Care (SoC)
New Hampshire
New Hampshire Pain Collaborative
New York
Finger Lakes Independence Center
Steffens Foundation
Ohio
The Ability Center for Greater Toledo
Oregon
Eastern Oregon Center for Independent Living (EOCIL)
Oregon Pain Action Group
Pennsylvania
PA Statewide Independent Living Council (PA SILC)
South Carolina
Able South Carolina
disAbility Resource Center (dba) AccessA
Texas
REACH Resource Centers on Independent Living-Fort Worth, Dallas, Denton & Plano, TX
Virginia
Blue Ridge Independent Living Center
disAbility Resource Center for the Rappahannock Area
Washington
Center for Independence
WA State Independent Living Council
Wisconsin
Access to Independence
IndependenceFirst
West Virginia
West Virginia Olmstead Council